@berta929, that's quite the surgery having both the Whipple procedure and liver transplant at the same time. How long were you in the operating room? Are you now considered cancer free?
Hi @colleenyoung ,
The surgery was scheduled for 12 hours but they finished in under 5 hours. It went very smooth no complications, thank god. At this point I am considered cancer free. Mayo has been amazing from the beginning and continue to be, as I'm still under their care since my case was a little out of the norm they wanted to watch me until my 1 year follow-up.
Hello,
This is my 1st time posting, I’ve read a lot of post and wishing everyone positive vibes. I just wanted to share my journey in case it helps anyone in any way. I’m 52, I was diagnosed with Bile duct cancer / CC in April 2023. I have PSC/Ulcerative colitis, so I was getting regular blood checks every 3 months. I had no symptoms, but my liver enzymes were elevated. My gastroenterologist did an ERCP with biopsy and cancer was detected. I was referred to Mayo AZ to get a full evaluation. I did radiation and Chemo treatment at the same time; 2x a day (morning and evenings); 34 total sessions. Once they confirmed cancer had not spread to my lymph nodes, I was activated on the liver transplant list. I had the Whipple procedure and a liver transplant at the same time on 9/1. I’ve had a couple hiccups along the way, but nothing major. Still dealing with some discomfort/numbness around incision area hoping as time goes by it gets better. If anyone has any questions, feel free to reach out.
@berta929, that's quite the surgery having both the Whipple procedure and liver transplant at the same time. How long were you in the operating room? Are you now considered cancer free?
Hello,
This is my 1st time posting, I’ve read a lot of post and wishing everyone positive vibes. I just wanted to share my journey in case it helps anyone in any way. I’m 52, I was diagnosed with Bile duct cancer / CC in April 2023. I have PSC/Ulcerative colitis, so I was getting regular blood checks every 3 months. I had no symptoms, but my liver enzymes were elevated. My gastroenterologist did an ERCP with biopsy and cancer was detected. I was referred to Mayo AZ to get a full evaluation. I did radiation and Chemo treatment at the same time; 2x a day (morning and evenings); 34 total sessions. Once they confirmed cancer had not spread to my lymph nodes, I was activated on the liver transplant list. I had the Whipple procedure and a liver transplant at the same time on 9/1. I’ve had a couple hiccups along the way, but nothing major. Still dealing with some discomfort/numbness around incision area hoping as time goes by it gets better. If anyone has any questions, feel free to reach out.
Annual CT scan that surveils stable pleural placque in lungs from asbestos exposure 50 years ago detected a 5 cm lesion on liver. Follow on MRI confirmed diagnosis of cholangiocarcinoma. Had liver biopsy on May 2, 2024. Meet with oncologist/surgeon on the 28th and 29th. Suspect 3 months of chemo to shrink or stop growth before resection. Had grown by a third in 30-40 days. Have set up local chemo locally to where I live in Upstate New York. Hopefully will begin in early June. Meanwhile have been self educating myself on all aspects of the disease. Have been very impressed with the standard of care at the Mayo clinic. Just a little concerned with how fast treatment/appointments happen as hoping to leverage early detection.
It sounds like you have a plan in place for your chemo and then surgery. It is great that you can have the chemo nearby. Educating yourself is a valuable thing to do right now.
Are you using any particular websites to learn about this type of cancer? Google Scholar is a good resource. While it tends to be "scholarly" and more technical than some websites, you might find it helpful. The American Cancer Society's website is a more layman-friendly website.
I look forward to hearing from you as you continue this journey. Will you continue to post as you have questions or concerns?
Hello @joed787 and welcome to Mayo Connect. This is great forum to meet with others who are on the same journey! It is good that you are a candidate for resection surgery.
I'm also glad to hear that you are being treated at Mayo Clinic. Did your medical team indicate how many chemo treatments would be needed prior to surgery?
I see that you posted that you are asymptomatic now. How was the cancer found?
Annual CT scan that surveils stable pleural placque in lungs from asbestos exposure 50 years ago detected a 5 cm lesion on liver. Follow on MRI confirmed diagnosis of cholangiocarcinoma. Had liver biopsy on May 2, 2024. Meet with oncologist/surgeon on the 28th and 29th. Suspect 3 months of chemo to shrink or stop growth before resection. Had grown by a third in 30-40 days. Have set up local chemo locally to where I live in Upstate New York. Hopefully will begin in early June. Meanwhile have been self educating myself on all aspects of the disease. Have been very impressed with the standard of care at the Mayo clinic. Just a little concerned with how fast treatment/appointments happen as hoping to leverage early detection.
Having first chemo treatment after I meet with oncologist and surgeon in Rochester Mayo location at the end of May. Just pleased that I am a candidate for resection at this time. Currently asymptomatic for now.
Hello @joed787 and welcome to Mayo Connect. This is great forum to meet with others who are on the same journey! It is good that you are a candidate for resection surgery.
I'm also glad to hear that you are being treated at Mayo Clinic. Did your medical team indicate how many chemo treatments would be needed prior to surgery?
I see that you posted that you are asymptomatic now. How was the cancer found?
Having first chemo treatment after I meet with oncologist and surgeon in Rochester Mayo location at the end of May. Just pleased that I am a candidate for resection at this time. Currently asymptomatic for now.
@krishh I appreciate all the details you have provided regarding your treatments and the way you have responded to them. I am sorry that you have had such a hard time with the treatments so far. Sometimes large medical centers who are research-oriented can provide some additional answers. Do you have a large university medical center nearby where you can get a second opinion? Or, are you able to consult with a Mayo location (Minnesota, Arizona and Florida)? Teresa
My name is Joe Duffy. Just beginning my journey with Cholangiocarcinoma. I will start neoadjuvant chemo and hopefully resection liver surgery in 3-4 months. Expect it to be a long battle as my research has indicated that this is tough adversary. Glad to be a part of your communication forum.
@colleenyoung , we finally saw his Oncologist yesterday and we found out that the cancer spread to both his liver lobes. My husband went with my FIL, they left there with: it’s fatal and we can do palliative treatment chemo every 3 weeks as long as the body can take it. Then 4 hrs later the Oncologist and his team came up with a new plan it’s called T.A.C.E. Procedure. They feel real confident that it will cure the cancer. Praise God that we have another option. A great one. They said that it has over 70% success rate.
He also finally told my MIL now that he had something to tell her and surprisingly she took it well. My FIL has also been diagnosed with cancer 2 other 2x’s (no lie) and each time he was ready for surgery they came back and said that it was gone they couldn’t find it. Prayers work and Gods not done with him yet!
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Hi @colleenyoung ,
The surgery was scheduled for 12 hours but they finished in under 5 hours. It went very smooth no complications, thank god. At this point I am considered cancer free. Mayo has been amazing from the beginning and continue to be, as I'm still under their care since my case was a little out of the norm they wanted to watch me until my 1 year follow-up.
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2 Reactions@berta929, that's quite the surgery having both the Whipple procedure and liver transplant at the same time. How long were you in the operating room? Are you now considered cancer free?
Hello,
This is my 1st time posting, I’ve read a lot of post and wishing everyone positive vibes. I just wanted to share my journey in case it helps anyone in any way. I’m 52, I was diagnosed with Bile duct cancer / CC in April 2023. I have PSC/Ulcerative colitis, so I was getting regular blood checks every 3 months. I had no symptoms, but my liver enzymes were elevated. My gastroenterologist did an ERCP with biopsy and cancer was detected. I was referred to Mayo AZ to get a full evaluation. I did radiation and Chemo treatment at the same time; 2x a day (morning and evenings); 34 total sessions. Once they confirmed cancer had not spread to my lymph nodes, I was activated on the liver transplant list. I had the Whipple procedure and a liver transplant at the same time on 9/1. I’ve had a couple hiccups along the way, but nothing major. Still dealing with some discomfort/numbness around incision area hoping as time goes by it gets better. If anyone has any questions, feel free to reach out.
~Berta
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3 ReactionsThanks for the recommendation on website research. Will be happy to share progress on my journey.
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4 ReactionsHello @joed787
It sounds like you have a plan in place for your chemo and then surgery. It is great that you can have the chemo nearby. Educating yourself is a valuable thing to do right now.
Are you using any particular websites to learn about this type of cancer? Google Scholar is a good resource. While it tends to be "scholarly" and more technical than some websites, you might find it helpful. The American Cancer Society's website is a more layman-friendly website.
I look forward to hearing from you as you continue this journey. Will you continue to post as you have questions or concerns?
Annual CT scan that surveils stable pleural placque in lungs from asbestos exposure 50 years ago detected a 5 cm lesion on liver. Follow on MRI confirmed diagnosis of cholangiocarcinoma. Had liver biopsy on May 2, 2024. Meet with oncologist/surgeon on the 28th and 29th. Suspect 3 months of chemo to shrink or stop growth before resection. Had grown by a third in 30-40 days. Have set up local chemo locally to where I live in Upstate New York. Hopefully will begin in early June. Meanwhile have been self educating myself on all aspects of the disease. Have been very impressed with the standard of care at the Mayo clinic. Just a little concerned with how fast treatment/appointments happen as hoping to leverage early detection.
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1 ReactionHello @joed787 and welcome to Mayo Connect. This is great forum to meet with others who are on the same journey! It is good that you are a candidate for resection surgery.
I'm also glad to hear that you are being treated at Mayo Clinic. Did your medical team indicate how many chemo treatments would be needed prior to surgery?
I see that you posted that you are asymptomatic now. How was the cancer found?
Having first chemo treatment after I meet with oncologist and surgeon in Rochester Mayo location at the end of May. Just pleased that I am a candidate for resection at this time. Currently asymptomatic for now.
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3 ReactionsMy name is Joe Duffy. Just beginning my journey with Cholangiocarcinoma. I will start neoadjuvant chemo and hopefully resection liver surgery in 3-4 months. Expect it to be a long battle as my research has indicated that this is tough adversary. Glad to be a part of your communication forum.
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3 ReactionsThanks for the update. What a rollercoaster from hearing the news about cancer spread to a hopeful treatment option.
There are few discussions about TACE here that you may wish to review and join.
See all related TACE discussions here: https://connect.mayoclinic.org/search/discussions/?search=TACE
Sending hugs and strength.
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